Waves

    It has been awhile since I've posted about the little man. I'm sorry about that, seems like I had my own struggles this year and had a hard time getting myself figured out. He has grown leaps and bounds this year. Learning a new homeschool program and succeeding in his first semester with almost straight A's! He has been working on his behaviors and even took on two more dance classes this year as well as two parts in their nutcracker production. Don't get me wrong here ,we have bad days, really bad days and even great days. It's like riding a wave you never know which way it is going or how hard it is going to crash.

    I still struggle with parents who don't understand that Autism is not something you can see on the outside. It is in inner battle and many people have their own battles inside and are considered "normal". His are just different and you can't always see them. When you do see them they take on many forms. Could be a sensory overload issue and then he has an outburst, or maybe he is sensory seeking which for Jacob is rough play or in the past touching others hair to calm himself. It could be a transition or a sudden change of plans that sets him off.  Oh riding the waves....
   Other waves we are riding lately are dealing with services for the little man. Seems like the minute we get everything right in order and he is getting in the groove of things and then something gets changed through insurance or school. It's driving me nuts. Despite the issues of not knowing what is next for him, he seems to get great support from those who try with him. I can hear it in his voice when I say your name to him or the giggle he makes when I tell him you are coming over or we are seeing you soon. Some of you have been lucky enough to hear him express his love to you and others yet don't realize he does but those of you who have made of a point of talking with him about the things he loves or just trying to understand him have helped him this year. He feels loved and I love that!
  We took a trip in the spring to the ocean. He just loves the beach he had only been to the lake. This was his first trip to the ocean that he remembers and he was timid of the waves, but with encouragement from his sister he was loving them and riding them in. Ahh the waves. Thank you to all who have encouraged him, tried to connect with him and help him grow!

A Fish In Water

     Feels like we have been through enough this school year and any happy endings have been a welcoming surprise. Jacob struggled this year, but I have seen so much growth as well.  Not just the belly hanging out of pjs and pants turning into waders type of growth either. He has been doing really well with his ABA therapy and seems to have done really well in speech and social group too. He seems more engaged with others around him and has been working on including peers and playing nicely together.  I hate to make more changes for next year, but I have signed him up for an online homeschool program next year.
      I think he did great this year, but I want to give him more. I feel like I might of been lacking and it was a juggling of sorts too. I basically was his curriculum coordinator and sent all his work to be completed at ABA.  It was nice to have control of what he struggled on and tailor it to where he was at academically.  I felt like I finally knew where he was at and what he needed. But I still had that need to have him in an accredited program.  I felt like I might be missing something important. He just took the placement tests for this new program. I don't know why I'm surprised, but they said he should be in fourth or fifth grade. He is a 1st grader.......I worked hard on second grade last year with him and did know his math skills were that far. But I can't imagine him skipping that many grades in a new program. I told them 3rd grade for next year. I hope I'm not doing the wrong thing, my thoughts were to get him adjusted to the new program next year and after that he would surely qualify for the gifted program  the next year and take more challenging  courses. I struggled last year too.
     Thinking he would go back to public school. People questioning why we didn't give the public school a second chance.  I held out hope that he would be able too, but after this year I can see why it will not be an option for years to come. Call it a mother's intuition or whatever, but he needs ABA like a fish needs water. Don't get me started on the fact that this whole skipping grades thing never would have happened at his old school. Because " He has an IEP, he can't skip grades". Yes lets keep focusing on his disabilities and ignore his abilities.....
    I was also surprised he did well in ballet this year. He moved up, but struggled this year once they introduced the barre exercises. I will be waiting till late summer to see if he wants to continue. He seemed so pleased with himself for making it through the classes and the end of the year showcase.  He needs the break right now both from dance and school. Summer should be a good time for him and he has earned a break.

Autism and Bereavement

     It has been a rough few months. I wanted to write about holidays and stress in January and how parties affect Jacob. Also his birthday in February, but things turned from pure excitement to a nightmare in a quick amount of time.  I will do my best to give you Jacobs perspective on this, but its been an all around hard time for us all. In December right before Christmas I found out we were going to have another child. I couldn't wait to tell the kids and surprised them with an early Christmas gift. In the box was ultrasound pictures of baby Charlotte and a pack of baby onesies. They seemed thrilled.

    For weeks the kids fought over the sex of the baby. Sophie hoping for a sister and Jacob a brother. Jacob declaring after a vote that sophie wanted nothing to do with that it was boy. He and I voted for a boy and I only voted for a girl since Sophie declined voting and not giving into such a silly way to determine the sex. 

    I was having issues spotting the first couple weeks and went in to have ultrasounds done every two weeks. Jacob told me it was a boy because it had short hair in those pictures. Cracked me up, by his logic short hair meant boy even though I constantly told him the baby had no hair right now. Baby was fine every ultrasound time, until the NT scan. Which this scan I had no idea was even a test until after the results because I had never gone through this test for any of my other children. 

   I don't want to get into a play by play of each appointment after, it was like a slow train wreck and quite frankly not something I want to relive. We would find out each time something worse about baby Charlotte. After each visit we told Sophia we were not sure she was going to make it and what they found. Jacob on the other hand was going to be hard to explain this to. We found out about the baby being a girl at the same time we found out she had trisomy 13. We did not tell him it was girl until after she passed away. 

    I discussed ways to have this talk with his therapy and they sent me to this site (http://www.oneplaceforspecialneeds.com) They have great social stories for this and they gave me some other resources on how to deal with death. This situation was a tricky one, and I wasn't sure how to go about it. So I showed him the information and tried to look at it from his perspective. Never dealing with death before and knowing how he didn't feel connected to Charlotte I tried to look at it how he would. I ran and grabbed a book about the body from his home school library. He love science so I could tell I had his attention, unlike the other stuff I showed him. I talked to him about the brain and its sections and how Charotte had no forebrain. I showed him the heart and its sections and how Charlotte had only a two chamber heart. I talked about how she didn't make it to be with us because of this. 

   I could tell he finally understood,  I was talking on his level and he understood she was "broken". He wasn't visibly upset on the outside, but we all grieve differently so I don't know how he is inside. Emotionally he still is a 4 or 5 year old so I didn't expect much. But he understood which is half the battle. He seems to be back to normal now, but I just need to my find my new normal, whatever that is.

The Nutcracker

I am sorry I haven't posted in over a month! I wanted to make sure I didn't jinx his first year with the Nutcracker at The Fort Wayne Ballet by even saying things were going good or by saying anything at all. I would say from the start I had my apprehensions as to how well the little guy would do.  It is weeks of practices and many late nights of rehearsal and then shows.  Ask any 6 year old to sit still and be good for two to three hours backstage is hard enough, but with someone like Jacob its twice as hard. I am going to start at the beginning.....

Even before this season I was thinking about this a year ahead, always have to think ahead...we took him to see his sister perform in the  2013 Nutcracker and he fell in love with Drosselmeyer and his magic.

 Next step...fast forward  May 2014 end of year showcase. All ballet classes perform on the stage for the family show. Will he love it? Yep, ate it up and asked to tryout for nutcracker in the fall.

Tryouts: I have been through this 4 years with Sophia so I knew the drill. Well they give the kids numbers to be pinned to their shirts and cart them off in groups. Of course there is the worry he would complain about not being #1 and the pins bothering him through the shirt but they didn't....thank goodness!  I thought it would be 30 minutes without seeing him, it ended up being over a hour. Without me there....I was freaking out and hoping there would be no huge meltdowns or issues. He came back smiling.

Cast lists: Worry set in, what if he didn't get a part? "Well he can't know what he's missing if he's never been in it" I was thinking. He got a part, it was a mouse, and it was exactly what he wanted!

Practice: I already talked with the teachers ahead of time about issues. They know he  might not do well sitting in the  classroom during the practices for over a hour with just waiting, so I kept him in the hall playing on his DS until his cast was needed.  During his time waiting his turn in the classroom practices he made goofy faces at himself in the mirror, played with the laces on his shoes, or sat there humming the music.  One time he did manage to get separated from the other boys and was playing with the equipment on the side of the room. I have to say overall he was great during practices and enjoyed doing his part.

Rehearsal nights: The longest nights. These were like a trial run really, and how would he handle wearing the makeup, the costume, the large stage, the lights and all the props? Well he did want to investigate props the first night, good get that out of the way. I know he was getting familiar with his surroundings and probably good so he can move on and next worry which was about the makeup the next night during dress rehearsal. Which of course  he protesting putting on. Then protested putting costume on. I just used some slight of hand momma bear sweet talk and boom he was in it! LOL He did great were the reports that came back.

Show time:  Jason and I had backstage passes just in case and throughout the whole thing we ended up using it three times. Honestly I was going to sit with him and be there the whole time. The more I thought about it I decided that would not be best. He needs to be independent and we were always downstairs if need be. I heard of issues in the dressing room, not from him but another child pestering him. I did have my little mother hen up there too, Sophia always looks out for him and it made my choice to stay downstairs even better. He was given some independence and he did ask for us and a break, I know it was to get away from the other child a few times and some were because the girls were so loud he couldn't read his Captain Underpants book. He complained of being hot in that costume and didn't like getting his makeup off either. He was even released early which helped with spending less time in the loud dressing room.  During one of the shows he made me crack up. There are security guards that check the kids in and Jacob told one of them he needed to go into the girls dressing room to check how the girls were doing.  The guards face was hilarious and I could tell he was trying to not laugh! He told him that he wasn't suppose to be in there, and of course Jacob protested. Jacob was supposed to be  with all the little girls thou, the guard probably thought he was suppose to be with the younger boys since hes so big, but they put the little guys with the little girls, since they all come dressed in there stuff anyways. LOL

Overall: I was told by a handful of parents they thought he was a sweet child and they enjoyed him being there. My heart ....so full after hearing that he made it through this and made some new friends.  I made sure to ask him while fresh in his head right as well left, what did you love about being in the nutcracker? I listed off all sorts of things like the stage, the music, costume and anything that popped into my head. His reply " Mommy I loved everything!" I then asked, What did you dislike about being in the Nutcracker? His reply " Nothing! I loved it all!" Then the big question, Do you want to do it next year? "YES!" was his reply. Well, we will see this next fall, we might be doing this all over again....

From Sophia

 

Hi!I am Jacobs big sister Sophia and I would like to talk about Jacob. My favorite thing about Jacob is that he is funny and has a very big imagination. One time he asked me to play Diversity. I asked him what that was and he said it was a Minecraft game, but he wanted to play it in real life. I thought that was very funny.
   Another thing I like about Jacob is that he knows stuff that we don't know.  Just the other day he was talking about atoms, protons, and antimatter. Then he said something about strange matter and we didn't think it was a real thing until we looked it up and the definition was the same thing Jacob had said to us.
  I love Jacob so much. I think that even though he has autism he is no different than any other kid.

Leaps and Bounds

We are moving in leaps and bounds! He definitely caught me off guard this week  with his educational plan. It
has me second guessing what material we should be working on. I am proud to say that I have moved him to second grade but in a more restrained manner. He is actually in 3 grade math and now fourth grade reading.  I am trying my best to get through skills that he hasn't done so he doesn't have too many splinter skills. His pace is months ahead of where I thought we should be and at this rate we will be in third grade by January for english skills. Just the other day I checked in his math program and the little stinker is moving up to fourth grade math! Sometimes I just have to take in the awes of Autism. These moments when I see the bright little man we have make up for all the days we struggle just to get our shoes on or even get that shower done in the morning!

The Cooper-Eager Observation

    We have stumbled upon the television series The Big Bang Theory. I have so much to say about Sheldon and now why I am now sucked into watching it.  I'm not one for watching shows that deal with what is going on with our family. I like the idea of escape and started to watch it this year just because I heard it was good. I had no idea I would get hooked on watching The Big Bang Theory and seeing so many similarities between Sheldon and Jacob. I know the writers say Sheldon doesn't have aspergers. I have read the articles and don't care if he is labeled that or not. What I do care about is how he is portrayed and how the other characters treat him. He doesn't need a label to see his struggles socially and what others find as his quirks are what I see as a combination of asperger like qualities. This page explains many and even talks about them in context of the show.(http://gypsumgirl.hubpages.com/hub/Sheldon-Cooper-PDs)
    What I love about the show is how even with all his personality quirks his friends try to understand him and in many ways try to help him with social issues he struggles with.  There are times where they are super frustrated in what he has said or done and try to explain to him what he has done is not acceptable behavior. It in a way gives me hope of people excepting Jacob and all his quirks. This week I have watched Jacobs manners around others and see that he struggles understanding them.  Also Jacob's way to start a conversion has changed from "excuse me" to "I want to say something".  He seems more patient in waiting to take turns and excepting no.
       He also went off telling me how much more brain power he had over mine. The little stinker knows he is smarter than others and sounded so like Sheldon in that moment I wanted to scream. I told him how rude that was to say that and that being smart also means knowing when not to say something that could hurt others feelings. I am so glad he is getting more ABA therapy this year and working on his behaviors instead of being at school full time. I have news in the school department but will write about that next post. His focus on his behaviors I think will be more beneficial in the long run.